Christine Hall: it is necessary to support not so much children with autism, how many a family as a whole

In autism Center "Marcus" in Atlanta (USA) support not so much children, how many a family as a whole

The doctor of psychology, the director of service of a clinical assessment of Marcus Autism Center, the USA, Christine Hall at the international forum «Each child is worthy families» has told about programs of support of parents and families. The report has turned out, on the one hand, quite pessimistic: at detailed studying of the problems arising in families of children autists, apparently, that these problems gloomily surround parents and the child from all directions. On the other hand, at early diagnostics and, respectively, the early beginning of special training and adaptation many of behavioural problems at the child can and not arise. And problems of parents can either be warned, or to compensate, or to teach to consult with them.

Diagnostics: it is better earlier though the grief will be more long

Researches have shown that at the age of two years the diagnosis "autism" can be authentic and stable. Nevertheless, in the USA this diagnosis is put to children who have already reached four years more often. Parents, as a rule, note anomalies in development of children till one year. By the way, prevalence of frustration of an autistichesky range is estimated at the USA approximately as 1 to 88, i.e. they are marked out at one of 88 children. In South Korea autism note at 2,6 % of children.

The first problem from which to parents help to consult with Marcus Autism Center — is alarm waiting for the exact diagnosis. From the address before the completion of diagnostics can pass till 9 months because of big employment of experts (only for 2011 they have accepted 5 thousand patients aged till 21 year). However all this time for parents works telephone consultation: students of medical colleges help parents to find the help in other medical centres, make explanations, simply support and make comments on features of development of the child.

Reaction to the diagnosis "autism" — this experience of a grief. «Parents have complex feelings as though they have lost darling» — speaks to Christine Hall. Adults pass traditional stages of experience of a grief: shock, denial, depression, anger, dispassionateness, acceptance. Besides, reaction of parents usually includes sense of guilt, a depression and alarm. «Parents often are angry, and can seem that they are angry with me. It is important, that the professional knew that it is a part of typical reaction to a grief» — marks out Christine Hall.

The grief is endured not only at the moment of diagnosis statement. «Parents of children with violations of development endure a grief throughout all life cycle as there are these or those events — tells the Hall. — Each new date, birthday or a holiday can appear a reminder on a grief. The chronic grief exhausts the person, oppresses him, causes feelings of a hopelessness and depression».

The grief grows together with the child autist

The American experts have noticed long ago: parents lose «natural optimism» already when their child gets to group of risk. It in a slowed-up way develops, and though people around consider that everything is normal, and console parents: «still will start talking», "will still be tightened" — adults only are convinced that close people to them do not listen and them do not hear. They lose confidence both of the child, and of. When violations are noted not only mother and the father, but also experts, parents lose hope for the "normal", "usual" childhood for the child.

First nobody gives to parents of a definite answer on a question that it to wait. But they compare the child to another’s children and lose hope that it becomes over time same, as all the others. Loss of one hope forces again and to endure a grief about another again.

Special educational programs for children with frustration of an autistichesky range — it is fine, but it is necessary to remember that while the child participates in them, parents endure one more loss — loss of shy hope that their son or the daughter can study with all other children. Teachers confirm that usual school to the child not on forces — and parents hoped that to school age it "will catch up" with contemporaries.

Then violations in development of the child become appreciable everything, including not to experts — and it is one more loss for parents: they hoped, even if did not say to itself about it that for passersby on the street and fellow travellers in transport of feature of their child will not be appreciable.

At the age of high school to the child still happen leaving and support, as small are necessary. Except household difficulties, parents again face grief experience: they lose hopes that the autist will outgrow the problems, will seize base skills, will arrive in college. Care of the child who has gained in strength and weight, more difficult, and parents hoped was that with age it becomes easier. Many teachers start to treat more cold the evolved child — and parents lose emotional support from people around.

Growing, the child ends training programs — and "settles" houses. Parents lose hope for that over time care of the child someone will assume another. If the child, growing, passes to live in «establishment with supported accommodation», parents again will grieve: they endure defeat because cannot satisfy need of the child for house conditions. Parents gradually lose hope to become the "normal" grandmother and the grandfather even if the evolved child reports about intention to marry and get children. The child should receive all the time the help and participate in adaptation programs — often for this time to parents it is necessary to forget about private life, to offer own plans.

Some experts consider that "chronically goryuyushchy" parents about the special child have simply got stuck in a stage of denial of a grief. Others say that if parents do not look too far in the future, do not accept in advance too gloomy forecasts — it is the adaptation mechanism, instead of pathological denial. Such adaptation allows to keep optimism.

Autism of the child — a stress for all family

To estimate level of a stress of parents at which children with autism grow, the questionnaire from 100 points — «an index of a parental stress» is developed. Experts estimate also satisfaction level marriage, alarm and depression level.

It is proved that parents of children with autism have a bigger stress, than parents of mentally retarded children or children with a Down syndrome. Fathers of children with autism are more inclined to keep away from a family at grief experience, than in cases with other violations of development of children. And, certainly, parents of children with autism endure a bigger stress and more often parents of typically developing children are less satisfied with the marriage, than.

Why autism of the child is reflected in all family as a whole? First, considers Christine Hall, because of communicative difficulties. The child cannot express the desires and requirements because of difficulties in speech development. It causes irritation and disappointment and parents, and the child. From there is an aggression both to itself, and to people around. Certainly, this aggression does not add happiness and without that to a tired family. Any change in world around and way of life can cause in the child autist a hysterics: sounds, smells, structures appear "trigger" of negative behaviour, and even parents happen are incapable to guess, what exactly disturbs the child.

Does not play, does not sleep, does not eat, does not put on

The child autist is not capable to games at the same level that contemporaries, at it are lowered «social interests». As a result parents should paint its day regimen on minutes, and on itself and on friends of time at them does not remain.

The child with frustration of an autistichesky range it is difficult to put to bed. «I talked to mother three-year Jane — remembers Christine Hall — it stacks its every evening for two hours, thus the girl sleeps only from 10th evening before o’clock in the morning, then several times wakes up, and after five mornings does not sleep in general». Because of a chronic sleep debt the child is worse trained, there are additional problems in behaviour. Parents do not fill up together with the child, test chronic fatigue, it is difficult to them to satisfy increasing needs of the child. Mother can make to itself the whole list of affairs — but cannot finish any because of the collected sleep debt.

95 % of children with autism experience difficulties with food: someone is extremely selective and eats only separate types of products, someone is not capable to cope with a spoon, someone so distracts on appearance and a smell of products that cannot eat them. Because of it many families cannot gather at one table — it is the reason for a stress three times a day. Children autists do not eat with contemporaries and companions on study — it strengthens their social isolation. Refusal of fruit and the vegetables, peculiar to many autists, conducts to aggression in behaviour, and also to obesity and metabolic disorders.

The child to considerable age is not capable to descend itself in a toilet or to put on. Lack of base skills adheres parents to it at 24 o’clock per day. Thus parents of children with autism often are confused from close attention of passersby. The simple campaign in shop with the child can become severe test. Children can inadequately behave in public places – because of it parents almost constantly are afraid that cannot save the child from dangers.

All these problems try to smooth in Marcus Autism Center: hour after an hour the expert in adaptive behaviour sits at a table with the child to teach him is. For a tiny slice eaten or for adequate movement with a spoon in a hand of the small patient strenuously praise. Parents are present during occupations to adopt strategy of communication with own child and to continue training to the simplest skills of the house. Mother and the father learn to play with the special child and to use game as a communication method.

Mine under walls of a family fortress

The inadequate behaviour of the child leaves to parents not enough time for each other. It is difficult to them to find the nurse, they almost do not remain alone, they have not enough possibilities to communicate with friends and relatives — from here mutual remoteness and isolation from society.

In Marcus Autism Center try to support to spouses as to a married couple. It not psychoanalysis, and training to skill to discuss and cast in a family. It becomes easier to spouses to keep a family if the child will teach to go independently to a toilet, it is better to play, if problems in his behaviour, a dream and food mode decrease. It is important to teach a family the elementary — is at one table. One of the most important programs of the help — to convince parents that in disorder of development of their child there is no their fault.

Financial costs of training and treatment of the child with autism are huge, and one of parents should refuse work forever more often. The stress because of shortage of means is aggravated with concern on the one who will care of the child in the future when parents do not become.

In Marcus Autism Center of parents learn to consult with all family roles: not to forget that you not only mother of the child autist, but also the wife, the daughter, mother of other children, the daughter-in-law or the sister. Experts remind that brothers and sisters of children with autism cannot play a role of the constant nurse for them: they and so are in a constant stress because of impossibility normally to communicate with the brother or the sister, because of jealousy of with whom parents will see off much more time, because of close attention of contemporaries. Besides that aggression of the autist is often directed on the next native — the brother or the sister — those understand that in the future they most likely should assume care of the adult autist, and despond about it.

«The professional help for family preservation if the offences which have collected to the address to Marcus Autism Center, do not pass can be demanded — speaks to Christine Hall. — It is necessary to make effort to focus attention not on a grief and difficulties, and on pleasures of education of the child with special needs, on surprising properties of love to it». Parents learn not to perceive children with autism as «a family shame», not to hide from reality and as soon as possible to begin intervention, to avoid manifestation of the greatest possible number of violations. It is important to keep the diary, to allocate time for a relaxation, to concentrate on achievements of today, instead of on troubles of the tomorrow’s. Often the laughter and humour appears the best medicine.

As a result, as researchers note, parents adapt for education of children autists more often. It is important to know in detail about possible positive results — it will give optimism. In the USA researches show that number of stains in families of children with autism not above, than in families of typical children. If once Russia can brag of the same statistics, it will be possible to speak about success of programs of support and education of families with children autists.